day 1572 - a new year

Well, here we are in January, 4.5 years after the beginning of my journey with atypical facial pain.  Gosh, it seems like forever some days; others, it seems like just yesterday I was doing normal things in a normal way.  Heck, I don't even know what normal is any more. 

The head and face pain; the constant ringing in my ears; the activity intolerance; the sensitivity to light and sound; the fatigue; the lack of motivation - they have all become as familiar to me as my own skin.  They don't ever leave me alone no matter how little I do or how many meds I take or how little/much I sleep.  It really makes no difference. 

My ability to be independent has been altered.  I can't always take myself to the doctor or go shopping or take care of the house alone any more.  I need help.  I don't always go to bed with a clean kitchen.  I can't remember the last time I cleaned the house really well.  We just live with the dust and the too-infrequently-vacuumed floors and the dishes in the sink.  I don't like it, but I have learned over time that I cannot drive myself to achieve what used to come to me easily or I will be exhausted and that leads to crankiness, grumpiness and a short temper.  The more tired I get, the less I tolerate the other irritating things like light and sound and noxious smells and movement and the all too frequent demands on my time.  I have to be careful not to lash out, not to lose my temper and say what is bubbling up from under my thin veneer of hospitality and tolerance.  What I often want to do is tell people to leave me alone and go away.  I can't do that.  I need my family and they need me.  I will inconvenience myself and put myself out there and stretch myself thin in order to spend time with my family because they are important to me.  It's a tough choice to make.

I'm gonna go rest.